Anyone who has had WBR in last year, two, five? Need info...

hutchibk · 08-30-2009, 01:40 PM

Hi all - I would like to ask for input about side effects of WBR:

* immediately after treatment
and
* longer term effects after 6 mo., year one, two, five, etc...

I am not there yet, but may be some day, and want to know the real reality from my friends in real time, if you know what I mean.

Thanks all!

alicem · 08-30-2009, 08:21 PM

Brenda, you so remind me of me. You must have been a Girl Scout. Remember the motto ... "Be Prepared"!

Sending you cyber hugs.

hutchibk · 08-30-2009, 10:18 PM

Alice, we HAVE to get together!! I'll send you a message.

Sheila · 08-31-2009, 05:08 AM

Brenda
I think that Gemma did...you might want to email her or catch her on Facebook...she seems to be doing very well! You are so in control!!! I admire that!

Beckie · 09-01-2009, 04:47 AM

I had WBR two years ago, just 10 treatments and then targeted radiation. I really didn't have any side effects that I remember. I think it may have added to the chemo brain, but I don't know that for sure. I went to the opthomologist last week because of light sensitivity, and irritation when in a room with a ceiling fan. I was told the radiation damaged my eyes, and they are very dry. They also saw spots in the back that looked like mini strokes, but they have not affected my vision. I think that if you can have targeted radiation without the WBR it may be better, but it really did not interfere with my life.
I hope you never have to do it.
God bless you. Beckie

hutchibk · 09-01-2009, 10:42 AM

Thanks Sheila. It might look like control from the outside... ahem.

Thank you Beckie. We have been doing only targeted up until now, because of course that is what I preferred! But, it's not possible where the tumors are located this time, and we worry that there might be seeds of others that we can't see. We don't necessarily have to do WBR at this point, or maybe ever, but it is out there as an option we should talk about. My rads onc is very sensitive to not painting us into any corners and saving WBR as a last resort.

Bill · 09-01-2009, 06:15 PM

Hi Brenda! You are one awesome Lady, that's for sure. Nicola had one round of WBR during the summer of 2007. Prior, her rad. onc. told her that she would probably lose her hair again, and this time it was not likely to grow back. This turned out to be true. After a few (5-8?) treatments, she began to experience fatigue that she had not dealt with during her localized rads. to the breast area. Keep in mind, as she began the WBR, she was on Gemzar, for treatment of her liver mets, which had to be halted during the WBR. Her situation was different than yours. I hope this has helped in some way. Love ya, Bill

hutchibk · 09-01-2009, 09:08 PM

Of course Bill, every little bit helps put together a big picture! And I suspected the permanent alopecia, but it is good to have it confirmed. I don't want any surprises along the way.

GemmaG · 09-02-2009, 04:52 AM

Dear Brenda,
I have had WBRT last year, a month after craniotomy. Had 20 treatments. It was the most difficult treatment for me (nauseated for 5 months or so). My hair didn't grow back anymore. But good news is, my Brain MRI's showed NED! But my memory sucks! I must have bright pink sticky memos everywhere my house to remember things.
I hope and pray that everything will do good. You are an amazing woman. Rest assured that I'll always be here anytime. We'll all be here for you. I will look forward to read your new post. I was on Gemzar w/c had to be halted during the WBR.

Hugs,
Gemma

hutchibk · 09-04-2009, 10:25 AM

Thanks all - looks like I am out of the woods right now for WBR, but it might be good to keep this going as a reference for those who it might be the only best option at some point...